04/30/2026
Hello and Happy Thursday!
I have a great update for this week!
Every month for the next year, I have to have bloodwork done. These first couple months are especially important because the goal is to gradually triple my cellcept (long term meds) over the next couple months. IF my bloodwork comes back ok then we go up.
Yesterday my rheumatologist reviewed my labs and gave the go ahead to increase the cellcept as planned for this month. Labs will repeat at the end of May and if things go good then, I will increase to the goal dose that I will be on until this goes into remission.
I also had an ESR blood test done. Dr. Google and I researched this:
An Erythrocyte Sedimentation Rate (ESR) test measures how quickly red blood cells settle at the bottom of a test tube, acting as a non-specific indicator of inflammation, infection, or cancer. A high ESR suggests active inflammation, but it cannot identify the exact cause or location.
So this tests measures the inflammation in my body. I had this done at the beginning of March. Normal range is 0-29. I was at 56 (way out of range!). This week I was at 23!!!! Meaning, the meds and everything else is starting to work and that is clearly visible in this test! (photo attached to see the trend line)
I have been walking my dog just about every morning. I am up to about a mile every morning. That requires several stops along the way but I am so happy to be out watching the sunrise with my best bud.
Tuesday, Cody and I walked 1.15 miles in 1 hour. Today we took the same walk in 49 minutes.
Progress.
Small steps every day but I am getting there!
Still a very long road ahead but it’s nice to be able to see and feel progress happening.
I will see the pulmonologist in a couple weeks. We had to double my starting dose of prednisone. He SHOULD be starting to taper down and then we have to make sure my lungs stay happy as that happens. I have heard from members of my group that the taper is always the tricky part.
I was also incredibly blessed to have wonderful friends shower me with love this week! My mom and I participated in an absolutely AMAZING sound bath by my friend Alex. Then my friend Lisa gave me the best haircut and dye ever – I have not had a haircut since the end of January. I was also able to sit through the whole process without having to have oxygen on. I try to see my friend Tom and the Salt Cave at least three times a week. I thanked Tom and told him how much I appreciated him, Alex, Lisa and so many others.
He reminded me of times I helped him in the past and said something I will leave you with that really touched me:
“That’s what we are here for Chris – to take care of each other.”
Yes, we are and again, thank you to all of you for all your help and support.
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